OCD Is No Longer in Charge: One Kid’s Story

The first time I heard the term, “Obsessive Compulsive Disorder,” or OCD, I was eight years old.

I had been seeing a therapist because I felt the need to touch certain objects a specific number of times, in a specific way, in order to keep the world safe and keep my parents alive.

I’d created rituals that I thought would allow me to control events. If I touch my doorknob eight times, Mom and Dad will come home unharmed. If I read the same page six times in a row, I won’t be orphaned. I was diagnosed with OCD.

Though I despised these repetitions, I needed them. They had an irrational logic which made me feel protected and allowed me to function. But when I turned 12, something cracked: the OCD became so controlling and incapacitating that I had to be out of school for four months, spent my days with tutors and therapists, and had thoughts about dying.

My phobia began with a somewhat rational fear of kidnapping and progressed to a wholly unfounded dread that my parents would abandon me. Like the majority of others diagnosed with OCD, I tried to quell these obsessions with compulsions, which are like fingerprints, unique to each person. They can range from incessant hand-washing to hoarding or alphabetizing belongings.

Dr. Christopher Pittenger, director of Yale’s OCD Research Clinic, puts the number of adolescent OCD cases at about 1 in 100 – a little less than the count for adults. That’s largely because OCD is underreported in kids: children can’t effectively describe what they’re feeling and parents often don’t recognize the symptoms.

“There’s a psychological feedback loop,” Dr. Pittinger explains, “where you have an intrusive thought, an obsession – for example a thought you are contaminated – and that leads to anxiety or discomfort, and then you do something – like wash your hands – that’s the compulsion.

"And that, at least transiently, alleviates the discomfort, which is good in the short term but it’s actually counterproductive in the long term because it reinforces the thought that the behavior is necessary,” he continues. “So you end up with a feedback loop from obsession to anxiety to compulsion to relief.”

When one therapist asked me to list all of my habits, my parents were shocked to see it stretch for pages. I felt compelled to touch an object until I felt just right. This “Just-Right Feeling” is a term which the doctor who ultimately helped me, Dr. Jerry Bubrick – director of the Intensive Pediatric OCD Program at the Child Mind Institute in Manhattan – uses to describe the calm that comes with compulsions.

It’s like a drug for people with OCD; we will do whatever it takes to get that reassurance, no matter how embarrassing our rituals. When I asked Dr. Bubrick to recall my case for this article, he said, “You were thinking about your obsessions so frequently that they were impairing your life.”

Dr. Bubrick states unequivocally that OCD never goes away. “We don’t have a cure,” he acknowledges. “The science is always evolving and we’re trying to find brain markers so we understand how it lives in the brain. But although we don’t have a cure; we do have a treatment that can be very effective.”

My OCD was managed through a combination of therapy and medication. The drug is Zoloft, categorized as a selective serotonin reuptake inhibitor, or an SSRI – a fancy name for a drug that tells the OCD to settle down. The SSRI targets the cortico-basal ganglia loop, a complex part of the brain that’s hyperactive in people with OCD.

“Some people with OCD always feel like they’re making mistakes,” says Dr. Pittenger. “We know that SSRIs can reduce the hyperactivity in that loop.”

But it was cognitive behavioral therapy (CBT), more than the SSRI, which brought me down from the ledge, so to speak. If you ask any kid to describe the early stages of this particular treatment, he or she will likely tell you it’s miserable, which is more or less the point. CBT means essentially doing the opposite of what your OCD tells you to do. It is like being afraid of heights and then having your doctor plan a visit to the top of the Empire State Building.

Of course, you do not start treatment at the Observation Deck; the regimen involves a series of baby-steps known as “exposures.” Little by little, you expose yourself to each stage of your particular anxiety until you acclimate yourself to the discomfort and even forget what you were originally so worried about.

“It’s an evidence-based, systematic approach,” says Dr. Bubrick, “that shows patients that it’s okay to face your fears and not do your rituals. And though it’s uncomfortable, people learn they can tolerate the anxiety that comes with it and they get better. It reminds me of my favorite Robert Frost quote: ‘The only way around is through.’ That’s exactly what CBT does.”

Dr. Bubrick helped me to get back to school and ordinary life after just a couple of months of exposures and his insistence that I mock my OCD. “If you’re able to laugh at it,” he explains to me now, “it gives you a little more distance from it and you’re able to fight it even more. So I use humor to help people push the thoughts further away from the reality and to fight them better.”

Only when my OCD reached an unbearable level did my family seek intensive treatment. I wish we hadn’t waited that long. My parents hesitated to let me write this story, but I think candor about childhood anxiety is overdue. This month is "Speak Up for Kids" month at the Child Mind Institute, a special month of awareness meant to break the stigma that silences families. I decided to step forward and "speak up" on the chance that hearing my story might help even one other kid. OCD made me feel alienated in a world I was sure only I understood. Had I realized how false that was, that there are millions of us out there, I might have felt a little less alone.

Now, having just turned 17, I can look back at my 12-year-old self with distance and compassion. Today, I can be just a typical teenager, a luxury my family was not sure I'd ever have. The normalcy of friends, classes, sports, acting in a play, even traveling abroad on my own, feels like a battle won.

Last summer, the Child Mind Institute asked me to mentor other kids at its day camp. I was able to tell the young campers that I’d been where they are, that I know what it feels like to be trapped in your own head. And that, while there may be no cure, there is hope. True, the only way around is through. But someone like me made it to the other side.

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Benjamin Shapiro is an 11th grader in New York City and enjoys acting, improv, tennis, his synagogue, and the New York Times crossword puzzle.

Ben, that was a wonderful article and I am very happy that you have felt so much relief. I have a friend with OCD who has never faced it the way you have, and at 52 he's lost a lot of time to it.
You done good! :-) This should give a lot of hope to many people who are suffering, and their families. Remember this and feel proud for speaking out. A big hug to you!!

Ben, I found your story very encouraging. One of my family members has been struggling with OCD for about 10 years. They will be seeing a new therapist this week who specializes in the treatment of OCD. We are very hopeful that there'll quickly be good results. Is wonderful to see how quickly you had seen results. Thank you so much for sharing your experience.

Ben, you have truly triumphed over this horrible disease and for that you are to be congratulated. That you can write so eloquently about your struggle is also commendable.

It is worth noting, though, that so many people who suffer with OCD do not have access to the best treatment. Though CBT is the gold standard, very few therapists are trained to do it and even fewer do it well. Insurance companies will pay for traditional "talk" psychotherapy but finding a true OCD therapist (as opposed to one who merely says they can treat the disease) who accepts insurance is like finding a needle in a haystack.

I hope that someday everyone is afforded the same treatment that gave you your life back.

By sharing your story, Ben, you have surely given hope to other OCD sufferers. My son was so debilitated by severe OCD he could not even eat, and exposure and response prevention (ERP) therapy saved his life. We need to keep spreading the word that OCD, no matter how severe, is treatable. I wish you all the best!

Benjamin you will never know how many other people you have given hope to who suffer with OCD. Therapies and medications keep getting better and better for treatment. And neuroscience is learning more and more about the brain and how treatments for OCD can be made more effective. Congratulations on being brave and sharing your story! I wish you the best.

It's an incredible and beautiful thing that someone could overcome such a condition. You really are an inspiration to children suffering from OCD. The thing that aggravates me is when people make light of OCD. When people say "Oh that's making my OCD crazy!" when a pen isn't strait or something along those lines, it frustrates me to know that they're are actual people who actually have incredible difficulty with conditions like these.